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10/08/07Tourette Syndrome—Now What?
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Tourette Syndrome Now What?

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information

This is a collection of quoted information from medical
sources about two separate but sometimes related topics: the “zealous pursuit
of cure" of tics, and complementary and alternative treatment approaches to
Tourette’s syndrome.

LONG TERM PREDICTORS OF TOURETTE’S SYNDROME PROGNOSIS

Severity of tics in childhood isn’t highly correlated with
outcome or prognosis. There are many other factors that come into play in
determining how well a child will do in adulthood. A supportive family, good
socialization, and a capacity for humor are just some of the factors that may
affect a child’s prognosis.

"Clinicians must emphasize that
the most important predictors of long-term outcome and well-being have little or
nothing to do with the presence of tics. Intelligence and the quality of
socialization have been shown repeatedly to be the best long-term predictors of
outcome, regardless of diagnosis. Bright, academically successful children who
have close and enduring friendships are likely to continue to be successful
interpersonally and professionally throughout their lives, regardless of their
future tic symptom severity. ... Severely debilitating TS in adulthood is a
rarity and represents the furthest extent of a very broad spectrum of symptom
severity." Peterson and Cohen, The Treatment of Tourette's Syndrome:
Multimodal, Developmental Intervention. Presented at a closed symposium held in
New Orleans, Louisiana on April 12, 1996. No longer online at psychiatrist.com/psychosis/worldwide/current/tourettes.htm

"The individuals with TS who do
the best, we believe, are: those who have been able to feel relatively good
about themselves and remain close to their families; those who have the capacity
for humor and for friendship; those who are less burdened by troubles with
attention and behavior, particularly aggression; and those who have not had
development derailed by medication. Children with relatively milder tics may
become chronic patients and some with quite severe tics may develop into
outgoing, happily married and successful young adults." Neuropsychiatric
disorders of childhood: Tourette’s syndrome as a model, DJ Cohen, JF Leckman,
and D Pauls, Acta Paediatr Suppl 422; 106-11, Scandinavian University Press,
1997.

PARENTAL MICROSCOPE OF SCRUTINY

However, it can be hard at times for parents to avoid
placing a child with tics under a “parental microscope of scrutiny” due to
parental concern about the tics. Disproportionate preoccupation with or emphasis on the
disorder, placing the condition at the center of a child’s existence, can leave a child confused about his or her
identity. At times, it seems that it is forgotten that children are more than
a long list of diagnoses and things that need to be “fixed."

"One of the pleasures of a long
involvement with children with Tourette’s syndrome has been to see that this
optimistic attitude is quite often empirically valid. ... Their tics become
less noticeable as they are no longer under the microscopic scrutiny of parents
and other adults who often see a child’s imperfections under a high degree of
magnification ...

... all too often, we have seen
development become derailed not only because of the severity of symptoms and
repercussions in family and community of tics and obsessive-compulsive disorder,
but because of the pursuit of ‘cure’ through many treatments, including
zealous use of medication. … [Children and adolescents] become confused about
their bodily states, what and why they feel the way they do, and what is under
their control. Their sense of autonomy becomes eroded.

"Even if Tourette Syndrome is the
correct diagnosis, it is important for families, educators, and clinicians to
focus on the whole person with TS … Preoccupations with the disorder
potentially have a number of adverse consequences, not the least of which is the
implicit message to the patient concerning his or her identity. To place TS at
the center of a person's identity is to invite distortion and a set of negative
expectations for that individual rather than a more adaptive outcome ... Chapter 1 of Tourette Syndrome, Advances in Neurology, Vol.
85., Editors, Donald J. Cohen, MD, Joseph Jankovic, MD, Christopher G. Goetz,
MD., Lippincott, Williams & Wilkins, November, 2000.

LINGERING LEGACY OF TOURETTE’S SYNDROME IN ADULT LIFE

Studies show that tics will remit or subside for most
children as they pass through adolescence. So, for most children, once they
attain adulthood, what will remain of their childhood experience with tics will be the effects of “growing up different”
and how that was responded to by people around the child.

In adulthood, a patient’s
repertoire of tics usually diminishes in size and becomes predictable during
periods of fatigue and heightened emotionality. Complete remission of both motor
and phonic symptoms has also been reported … In such cases, the legacy of
Tourette’s syndrome in adult life is most closely associated with what it meant
to have severe tics as a child. For example, individuals who were
misunderstood and punished at home and at school for their tics or who were
teased mercilessly by peers and stigmatized by their communities will fare worse
than a child whose interpersonal environment was more understanding and
supportive." Chapter 1 of Tourette Syndrome, Advances in Neurology, Vol.
85., Editors, Donald J. Cohen, MD, Joseph Jankovic, MD, Christopher G. Goetz,
MD., Lippincott, Williams & Wilkins, November, 2000.

ZEALOUS PURSUIT OF CURE AND ALTERNATIVE TREATMENTS

In the last decade, we have sometimes seen the "zealous
pursuit of cure" and parental preoccupations with the disorder result in
applications of unproven and sometimes unsafe alternative treatments. We hear reports
(most often on the internet) of
children whose simple childhood pleasures (the occasional unhealthy sweet treat
or television viewing) are removed in the belief that this will help stop ticcing.
At times, it appears that the goal is to stop all tics, even relatively mild
ones. A healthy diet, exercise and lifestyle can help lower stress on the
body, enabling one to cope better with tics. The concern is when there is an
overemphasis on extreme dietary measures, depriving a child of simple pleasures
that may increase tics, and/or making children feel even more different by
subjecting them to all kinds of unproven alternative treatments, methodologies,
vitamins, supplements, etc. Overzealous use of alternative treatments can be
equally harmful to a child's self-identity, but even more, alternatives can be
dangerous if not used under a physician's guidance. Children with tics may
already “feel different.” Depriving them of birthday cake, video games, and
other normal childhood pleasures, while subjecting them to large numbers of
daily pills and frequent doctor visits and procedures, can leave the child feeling even more different. While there are
cases where a child’s tics are severe enough that these measures may be
warranted, sometimes the severity of tics is not always commensurate with
the level of parental concern.

"Ironically, many parents who
fear giving drugs to their children will seek alternative therapies that involve
pills and elixirs with unstudied efficacy and side effects, but will not pursue
behavioral therapy despite its documented efficacy and safety." Tourette
Syndrome: Current Controversies and the Battlefield Landscape, Neal R Swerdlow
MD PhD. Current Neurology and Neuroscience Reports 2005, 5:329-33.

Fact: Despite the popular appeal
of these approaches, any role they might have in the management of tics has yet
to be proved."

"What about complementary and
alternative approaches?

Peer-reviewed published trials
investigating complementary and alternative management for tics, using
double-blinded, placebo controlled design, are scarce. Despite the paucity of
research, families are overwhelmingly using complementary and alternative
approaches for their children’s developmental and behavioral concerns, including
TS. The National Center for Complementary and Alternative Medicine (NCCAM)
within the National Institutes of Health provides health information guidelines
for consumers and health-care professionals considering CAM approaches.

If someone recommends an
alternative treatment or something that is not FDA-approved (such as vitamins or
herbal supplements that are sold over-the-counter), you should not assume that
it is necessarily safe or that it can be combined with any medication.

A number of years ago, the FDA
decided not to regulate the vitamins/herbals industry. Their decision should not
be interpreted to mean that herbals don't have the potential to have adverse or
even life-threatening consequences at times. It simply means that the U.S.
government took a ‘hands off’ position.

At a workshop held in 1999, Dr.
Rossann Philen of the Centers for Disease Control and Prevention in Atlanta
reported that alone and in combination with prescribed drugs, a wide variety of
dietary supplements -- including azarcon, greta, pay-loo-ah, chaparral, jin bu
huan, ephedrine, and many others -- have been linked to severe illness,
exacerbation of disease, liver damage, and even death. More recently, Gardiner
et al. (2004) reported that a growing number of children and adolescents are
using dietary supplements. The researchers found more than 50 percent of young
children and more than 30 percent of adolescents in the United States have used
a dietary supplement. 'We surveyed 145 families and 45 percent reported giving
their child an herbal product. Most of these caregivers did not believe or were
uncertain if herbal products had any side effects, and only 27 percent could
name a possible side effect. We found that more than half of caregivers were
unsure or thought that herbal remedies did not interact with other medications,'
Dr. Kathi J. Kemper, a pediatrician at Brenner Children's Hospital, said in a
prepared statement. 'And of those giving their children herbal products, only 45
percent reported discussing their use with their child's primary health-care
provider,' Kemper said.

The statements above may
alternately alarm and inflame many parents of children with neurobehavioral
conditions, since there is a small group of parents who seem committed to
trying one particular alternative therapy regimen. My intention is not to
alarm anyone, but to remind everyone that just because something is sold "over
the counter" or without prescription, it doesn't make it safe. Don't assume
safety. Ask.Copyright 1999, revised 2004. Leslie E. Packer, PhD. This
handout may be reproduced for your personal noncommercial use." Published at
www.tourettesyndrome.net/Files/RxQuestions.pdf

The obsessive “pursuit of cure" through unproven
methodologies and treatments is fueled by information available on the internet
and by an organization with a view to promote. I believe the
Tourette Syndrome Association should take a more active role in awareness about
the issues surrounding unproven treatments and those who promote them, rather than referring inquiries to other organizations.
The obsessive pursuit of "tic triggers" negates the simple fact that tics DO wax
and wane regardless of "triggers." We head down a very slippery slope if
we honestly believe that all tics have "triggers" and that our goal should be to
identify all "triggers" and stop all tics. That comes dangerously close to
the supporting the notion that we can stop all tics if we just work hard enough
at it, and that in turn comes close to negating any genetic basis for tic
disorders. Putting a child under the parental microscope of scrutiny can
compromise the child's identity. Doing it for unproven reasons (the
obsessive pursuit of "tic triggers"), and based on faulty science (biased and
unscientific internet surveys), does a disservice to children who may already be
feeling different and shouldn't have to deal with even more deviation from a
"normal" childhood.

(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
You can browse the pages in the order you desire, but if you're new to Tourette
syndrome,
you may get a better overview by reading through the pages in order, by clicking
on the Next Page links throughout.)